Kiernan, his parents Shaun and Amanda, and siblings Lierin, Kellen, and Rory.
“ENJOY THE LITTLE THINGS IN LIFE BECAUSE, ONE DAY, YOU’LL LOOK BACK AND REALIZE THEY WERE THE BIG THINGS.”
– The O’Neal Family
KIERNAN O’NEALCurrent Age: 5 Home State: Tennessee Diagnosis Date: June 8, 2020 Sanfilippo Type: MPS IIIB Parents: Shaun and Amanda Siblings: Lierin, Kellen, and Rory
What it felt like when we learned our child has Sanfilippo Syndrome…
Learning that Kiernan has Sanfilippo Syndrome was utterly devastating. A friend of ours had lost his son to Sanfilippo type A just 1.5 months prior to Kiernan’s diagnosis, so we immediately understood the gravity. The pain was so overwhelming, it was as if we were already mourning his death.
It was Kiernan’s sweet, empathetic, fun-loving personality that helped us through those hardest early days.
What our child loves the most is …
Kiernan absolutely LOVES horses … anything outdoorsy or farm-related, really, but mostly horses. He participates in therapeutic riding at Shangri-La Therapeutic Academy of Riding. He’s learning how to properly groom a horse, how to ride, how to control his body, and how to better follow instructions. The pony he rides is named Zipper, and Kiernan is forming a meaningful bond with him.
He also loves going to see the cattle and donkeys at the farm where his daddy works part-time.
One of his favorite pastimes is camping. He enjoys running around in the woods, being on the lake, and even sitting by the campfire … for a minute or two.
How has Sanfilippo affected our child?
Kiernan has global developmental delays. He also has the common tightening of the Achilles tendon, for which he is being fitted with AFO’s. All other effects are mild thus far, such as some slight enlargement of his liver and skeletal changes that are only visible by X-ray.
Of course, he has the facial features that are so common among people with Sanfilippo Syndrome, but those only serve to make him more beautiful in our eyes.
How has Sanfilippo affected our entire family?
We have learned not to take each other for granted. It’s really driven home the fact that none of us is promised tomorrow.
The hardest part of being a Sanfilippo parent is …
The hardest part is knowing what the future is likely to hold for our child but being powerless to change it.
The biggest misconception people have about being a Sanfilippo parent is …
People seem to expect that we will immediately know all the answers. This is a major learning process for us, and we rely, not only on what doctors can tell us, but also on the experience of the parents who have walked this road before us.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
We would tell them that people with Sanfilippo are not sick.
We get asked often if Kiernan is feeling better. He isn’t feeling sick, and, without a cure, he won’t get better.
If we could ask just one thing from the world/people, it would be …
We would ask that the world be kind to people with special needs and educate themselves on the struggles involved with genetic disorders such as this.
Why are we asking you to donate to Cure Sanfilippo Foundation?
We are asking people to donate to find a cure so no other children will have to suffer through losing their abilities to walk, talk, eat, speak, etc. So no other parents have to watch helplessly as their children go through this.
Our Latest News
We got the disappointing news recently that Kiernan was not accepted into the clinical trial we were hoping to get him into. The doctor who called us to tell us the news did say that the sister-trial for Sanfilippo type A is being followed up with a trial for older kids with lower developmental quotients. We’re holding out hope that they will do the same for type B and that Kiernan will be able to participate. We’re not giving up. We know God has a plan!